Online Insurance Guide

Online Insurance Guide Updated May 2015

Disclaimer: The Online Insurance Guide includes brief summaries of complex subjects. They should be used only as overviews and general guidelines. The views expressed herein do not necessarily reflect the policies or legal positions of the Pulmonary Hypertension Association. These summaries do not render any legal, accounting, or other professional advice, nor are they intended to explain fully all of the provisions or exclusions of the relevant laws, regulations, and rulings of various private and public insurance programs.

Original sources of authority should be researched and utilized.

TABLE OF CONTENTS Know Your Insurance Rights Affordable Care Act (ACA) Consolidated Omnibus Budget Reconciliation Act (COBRA)

Page 3

Types of Health Insurance

Page 5

Medicare Medicare Basics Enrolling in a Plan Finding Prescription Drug Coverage Medicare Part D Prescription Costs Table Medicare Plan Comparison Chart

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Social Security Disability Disability Basics Applying for Disability Disability Determination Disability Appeals Working with Disability Disability Rights

Page 13

Troubleshooting Insurance Problems Prior Authorization & Step Therapy Insurance Claims Insurance Claim Appeals Grievance & Complaints Department of Insurance

Page 20

Communicating with your Insurance Company

Page 29

Financial Assistance

Page 31

Additional Insurance Resources

Page 32

Glossary of Insurance Terms

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Welcome to our Online Insurance Guide! Whether you’re a patient, family member or medical professional, you will find tools and materials that allow you to advocate for timely access to affordable treatment.

KNOW YOUR INSURANCE RIGHTS You have rights, no matter what type of insurance you have. Knowing these rights will help you get the treatment to which you’re entitled. Here are some of the basics: Patient Protection and Affordable Care Act (ACA) prohibits insurance companies from denying you coverage based on a pre-existing condition and creates Marketplaces as a way to research and apply for health insurance coverage. The following steps have been taken to provide healthcare that is universal, continuous, affordable, sustainable and accessible.

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Prohibit insurers from rescinding policies once a beneficiary becomes sick Establish high-risk pools for people with pre-existing conditions who have been uninsured for at least six months Eliminate pre-existing condition exclusions for both adults and children Eliminate annual benefits caps Eliminate lifetime benefit caps on all policies issued or renewed after Sept. 23, 2010 Require insurance coverage of routine patient care costs associated with clinical trials Require insurers to allow young adults to stay on their parents’ policy until age 26 Gradually phase-out the Medicare Part D “donut hole” (begins in 2010 and completely phases out in 2020) Require most individuals to either obtain coverage or face penalties Require states to host health insurance exchanges — or marketplaces — where insurance companies can offer plans for individuals.

11. Establish subsidies for low-income families to purchase coverage through the exchanges 12. Prohibit waiting periods of greater than 90 days for private insurance coverage to begin 13. Require guaranteed issue and renewability of coverage, with rating variation based only on age, rating area, family composition and tobacco use Consolidated Omnibus Budget Reconciliation Act (COBRA) allows you to keep your health insurance policy if you are losing or changing jobs.

If a private, state or local government employer has at least 20 employees and offers a group health plan, COBRA requires that the employer offer employees, their families and retirees an opportunity to keep their health insurance at group rates after leaving the company or reducing the number of hours they work. If you stop work, you can maintain your group coverage for 18 months, but you must notify your employer within 60 days of the qualifying event that you wish to elect COBRA.

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You will have to pay both your share and your employer’s share of the insurance premiums, plus two percent.

Hence, COBRA can get very expensive over time because you do not have an employer supplementing the premium.

There are resources available — like Caring Voice Coalition — to help pay those premiums and coinsurances (see p.31).

At the end of the 18-month period, you are allowed to enroll in an individual conversion health plan if your employer offers one.

If you leave work because you are disabled, COBRA gives you an additional 11 months of coverage. This brings the total to 29 months, which may be about when your Medicare kicks in if you applied for Social Security Disability immediately after you stopped working. This is one reason that you should apply for SSD and/or SSI immediately after you stop working if you think you might be disabled for a year or more. Warning: the 11-month extension is not automatic — there are rules you must follow to be entitled to it.

Employment Retirement Income Security Act (ERISA) requires insurances providers to disclose plan benefits and funding levels, as well as how you can manage and access your benefits.

ERISA governs private health insurance provided by self-insured institutions (employers or organizations that pay for medical bills out of their own funds). A very complex law, ERISA provides certain rights, such as the right to appeal a denial of benefits and a right to judicial remedies. If your employer does not self-insure, but instead contracts with an insurance company, then your state’s laws and HIPAA govern these things.

Family and Medical Leave Act (FMLA) provides eligible employees with the right to take unpaid, job-protected leave for certain family and medical reasons with continued group health coverage.

This law applies to all private employers with 50 or more employees within a single state, state and local governments (including schools) and some federal employees. It says that an employer must allow up to 12 unpaid weeks of leave a year when various situations occur, such as a serious health condition that leaves the employee unable to work, or if a dependent of the employee has a serious medical condition that requires the employee to miss work in order to care for the dependent. Group health benefits must be continued during the leave. The law is enforced by the U.S. Department of Labor’s Employment Standards Administration, Wage and Hour Division.

Genetic Information Nondiscrimination Act (GINA) prohibits insurance providers and employers from discriminating on the basis of your genetic information.

Health Insurance Portability and Accountability Act (HIPAA) is a set of laws that protects your personal information while allowing healthcare administrators to conduct necessary business operations. It also outlines standards for portability (continuous coverage) and pre-existing conditions.

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TYPES OF HEALTH INSURANCE There are many different types of insurance payers, plans and programs in the United States, each catering to different populations with different needs. Use this table to learn more about your current or potential plan.

Insurance and Assistance for: Elderly Military Low Disability & Children & General Income Retired Veteran Public Insurance and Assistance: There are a number of government-funded programs that can help you pay for your medical treatments. Each has its own eligibility requirements.

Medicare is a federal program that provides health insurance coverage to eligible, qualified elderly and disabled individuals. Coverage benefits vary based on the site of service (i.e., doctor’s office, inpatient services, outpatient services or home health treatments) (see p.7).

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Social Security Disability Insurance (SSDI) is an insurance plan that helps to cover medical expenses when you are unable to work. You are entitled to benefits if you have worked jobs covered by Social Security and have a medical condition that meets Social Security’s definition of disability (see p.13).

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Medicaid is a series of state administered programs designed to provide health insurance coverage to individuals such as the disabled, children or pregnant women who have low income. Each state sets its own guidelines regarding eligibility and services.

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Supplemental Security Income (SSI) is a federal income supplement program funded by general tax revenue (not Social Security taxes). It is designed to help aged, blind and disabled people who have little to no income meet basic needs for food, clothing and shelter.

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Children’s Health Insurance Programs (CHIP) are state programs designed to provide coverage to uninsured children whose family income falls under a certain level.

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Disability

Insurance and Assistance for: Elderly Military Low & Children & Income Retired Veteran

General

Military: Military plans are designed to provide and cover the costs of medical services to active duty military, retirees, veterans and their families.

Veterans Affairs (VA) is responsible for providing federal benefits to veterans and their dependents. The VA provides coverage for basic and preventative care.

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CHAMPVA is a health benefit program for the families of veterans with 100 percent serviceconnected disability and surviving spouse or children of a veteran who dies from a serviceconnected disability. The VA determines eligibility and processes CHAMPVA claims.

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TRICARE is the name of the Department of Defense's managed health care program for active duty military, personnel, retirees and their families.

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Private & Other Types: Private plans are underwritten by either private insurance companies or private employers.

Enrollment requirements and costs are determined by the company.

Private payer plans vary greatly from company to company (and within companies) but are typically divided into two categories, indemnity plans and managed care plans. Today, virtually all private health insurance payers incorporate some form of a managed care component.

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Self-funded plans are job-based plans under which employers or unions set aside money to pay for health care expenses directly, instead of contracting for services from a private health insurance payer. In this respect, the employer or union is the insurer and carries the associated risk.

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MEDICARE Medicare is a federal program – administered through The Centers for Medicare and Medicaid Services (CMS) – that provides health insurance coverage to eligible elderly and disabled individuals no matter what their income is. Coverage benefits vary based on the site of service (i.e., doctors office, hospital inpatient, hospital outpatient or home health treatments).

Medicare Basics How Do I Know If I Qualify for Medicare?

You qualify* for Medicare if you are a U.S. citizen or permanent resident and you:   

Are 65 years or older Are under 65, have a disability and have been receiving Social Security Disability Insurance for 24+ months Have End-Stage Renal Disease, a permanent kidney failure, requiring dialysis or a kidney transplant

*The above requirements are only general guidelines; please visit www.Medicare.gov for more detailed criteria.

How Does Medicare Work?

Medicare is divided into four parts. Part A covers inpatient services, Part B covers outpatient services and Part D covers prescription drugs. Part C refers to private Medicare Advantage plans. These four parts, combined with the Medigap option, allow you to customize your Medicare coverage for your situation. See page 11 for more details on each part.

It is important to note that you will be enrolled into Original Medicare (Parts A & B) automatically unless you actively choose another plan.

Enrolling in a Medicare Plan How Do I Enroll?

If you already get benefits from the Social Security Administration (SSA) or the Railroad Retirement Board, you do not need to do anything to enroll.  

You are automatically entitled to Parts A and B starting the first day of the month that you turn 65.

Your Medicare card will be mailed to you about 3 months before your 65th birthday. If you wait until you are 65, or sign up during the last three months of your initial enrollment period, your Medicare Part B start date will be delayed.

If you are not receiving Social Security, Railroad or disability benefits you will need to submit an application to the SSA. Visit your local Social Security office or call the SSA at 1-800-772-1213 to sign up. The SSA can answer any questions about your application.

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When Can I Enroll?

Initial Enrollment Period (IEP): When you first become eligible for Medicare The IEP is a seven month period to enroll without penalty when you first become eligible for Medicare. You can enroll up to 3 months before your 65th birthday but no later than 3 months after the month of your birthday.

General Enrollment Period (GEP): If you refused Medicare during your IEP The GEP is January 1 – March 31 of every year. If you do not enroll during the initial enrollment period, but choose to enroll later during the GEP, you may face a penalty for each year that you were unenrolled. You pay this penalty for as long as you are covered by Medicare. You can also make an adjustment to your Medicare plan during the GEP after you enroll.

Special Enrollment Period (SEP): Any time while you have a separate group plan or shortly after you lose your coverage The SEP is a period to enroll without penalty if you initially refused Medicare because you were covered by other insurance when you first became eligible. The SEP extends to any time while you have group coverage, 8 months after you lose your coverage or when you (or your spouse) stop working.

When Can I Make Adjustments to my Medicare Advantage (Part C) or Medicare Prescription Drug Coverage (Part D)?

You can make adjustments to your Part C and Part D coverage without incurring a penalty during the Fall Open Enrollment Period. Fall Open Enrollment is October 15 - December 7 of every year. Enrollments and changes made during this period will become effective January 1.

If you have Medicaid and/or Extra Help – the federal program that helps pay most of the costs of Medicare drug benefit – or are in a nursing home, you can switch plans once a month.

Finding Prescription Drug Coverage As with any insurance plan, you will want to do your research ahead of time and compare plans. Follow the steps outlined below to help find the right plan for you. Please note that only some PH medications – Adcirca®, Adempas®, Letairis®, Opsumit®, Orenitram™, Revatio®, Tracleer® and Veletri® – are covered by Medicare Part D. Medications that require durable medical equipment to administer fall under Medicare Part B. 1. Decide what type of prescription plan you want.

Choose a standalone drug plan that offers just drug coverage (PDP) if you have Traditional Medicare and want to stay with it. If you have a Medicare private health plan (such as an HMO or PPO), you should generally get drug coverage from that same company. If your private health plan is a Medicare Savings Account (MSA), Private Feefor-Service (PFFS) or Cost Plan, you can join a PDP. 2. Gather your prescription information.

Make a list of the pharmacies you use regularly, the medicines you take and how much you currently pay for them.

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3. Do your research and gather the facts.

Visit Medicare's plan comparison tool – www.Medicare.gov/Find-A-Plan or call 1-800-MEDICARE (633-4227) – to compare different plans. Here are some important things to remember and questions to ask. a. Coordinate with your other benefits. Call the company that provides your current coverage to find out if and how it will work with the Medicare drug benefit. Many employer plans will not allow you to also have Part D, so you should ask: i. Will the Medicare drug plan work with my current drug coverage? ii. Could I lose my retiree or employer health coverage if I join a Medicare drug plan? b. Investigate your out-of-pocket costs and potential costs for different drugs. If your income is very low, you can get Extra Help (see p.10) to pay for most costs, but you will generally want to investigate: i. How much will I pay at the pharmacy (co-payments or coinsurance) for each drug I need?

Certain drugs may have high co-insurance. ii. How much will I pay in monthly premiums and deductibles? iii. If a drug I take has a very high co-insurance, is there a drug I can take that will cost me less, such as a generic? (Ask your doctor) iv. Does the plan have a “coverage gap” (see p.10), during which I must pay my full drug costs? c. Investigate which drugs your plan will cover. Each private plan has its own list of covered drugs (formulary) with different costs and restrictions, and you will want to ask: i. Does the plan cover all the medications I am taking? (Refer to your prescription list) ii. Does the plan cover the most important medications I take? (Ask your doctor) iii. If the plan does not cover a medication I take, does it cover one that will work for me? (Ask your doctor) iv. Does the plan require that I get special permission (such as prior authorization or step therapy) before it will cover a medication I need? v. Does the plan cover PH medications that I may need in the future? (Ask your doctor) d. Ask about your pharmacy network. You usually pay the full cost of non-covered drugs and prescriptions from out-of-network pharmacies. PH patients should pay special attention to pharmacy network, as it is critical that you be able to receive your medications through specific specialty pharmacies. i. Can I fill my prescriptions at the pharmacies I use regularly/what happens if I go to pharmacies that are not in my network? ii. Can I get my prescriptions by mail order? iii. Can I fill my prescriptions when I travel?

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MEDICARE PART D PRESCRIPTION COSTS Use this chart to help you understand what you might expect to pay out-of-pocket for a Medicare Part D plan throughout a benefit period of one year. Each individual plan differs and this is only one example, based off of 2015 costs.

This chart does not include monthly premiums. If you are enrolled in Extra Help or Medicaid, your out-of-pocket costs will differ.

5% Out-of-Pocket Costs: What you pay What your Medicare plan pays

95% 25%

100% If your income is very low, you can get Extra Help to pay for most of these costs.

Other sources of financial assistance include:  Medicaid  Non-profit organizations (like Caring Voice Coalition)  Pharmaceutical Patient Assistance Programs  State-sponsored pharmacy assistance programs See page 31 for more information on financial assistance.

$0 - $320 During the initial phase, you pay 100 percent of 1 costs. This is your annual deductible –00% the amount of money you pay before your insurance plan begins to help. The amount will vary by plan.

For 2015, your annual deductible will not be more than $320.

75%

Coverage Gap (“Donut Hole”)

Catastrophic Coverage

$320 - $2,960

$2,960 - $4,700

Over $4,700

After you have paid your deductible, Medicare will start paying for a set percentage of your prescription drug costs depending on your plan.

Once your annual prescription costs exceed a pre-determined amount (usually $2,960), you will have to pay 45 percent of the cost for brand name drugs and 65 percent of the cost for generic drugs out-of-pocket until you have paid an out-ofpocket limit ($4,700 in 2015).

Once you reach your outof-pocket limit ($4,700 in 2015), you will then pay a small coinsurance or a set amount – whichever is greater (plus your premium). The coinsurance cannot be more than five percent for each prescription; the set amount is $2.65 for generics and $6.60 for brand name-drugs.

You will have to pay the following out-of-pocket:  A monthly premium (the average national premium is $33.13 in 2015).  Part of the cost of each prescription (copayment/ coinsurance).

With the passage of The Patient Protection and Affordable Care Act (ACA) in 2010, the coverage gap is being gradually phased down.

By 2020, Part D enrollees will only be responsible for 25 percent of their total costs for both brand name and generic drugs.

The out-of-pocket amount that qualifies an enrollee for catastrophic coverage (currently $4,700) will be gradually reduced until 2020, when the ACA will be in full effect.

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MEDICARE COMPARISON CHART Medicare is divided into four parts. Part A covers inpatient services, Part B covers outpatient services, Part D covers prescription drugs and Part C refers to private Medicare Advantage plans. These four parts, combined with the Medigap option, allow you to customize your Medicare coverage for your situation.

It is important to note that you will be automatically enrolled into Original Medicare (Part A and B) unless you actively choose another plan.

Coverage Part A (Inpatient Services)

 Inpatient hospital care  Skilled nursing facilities (excluding long term care)

Cost  No premium – Part A is free if you or your spouse has worked and paid Social Security taxes for at least 10 years.

 Hospice

Original Medicare

 Some healthcare

Part B (Outpatient Services)

 Doctors’ visits, preventive care, outpatient care and most medically necessary doctors’ services  Durable medical equipment (DME)  Prescription drugs that require DME to administer  X-rays & lab tests  Mental healthcare

You will pay a monthly premium if you have worked and paid taxes for less than 10 years.

 Monthly premium ($99.90)  Annual deductible ($140)  Coinsurance/copayments

PH-Specific Coverage  Flolan®, Veletri® or generic epoprostenol  Remodulin®  Tyvaso®  Ventavis®  DME (e.g., home oxygen)  Pulmonary rehabilitation (PR) (You may be limited to 36 PR sessions per lifetime)

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Coverage Part C (Medicare Private Plans/ Medicare Advantage)

 Allows members the option to select a private managed care plan to replace original Medicare and its benefits.

Cost  Varies from plan to plan

 Plans must provide all Part A & B services (may provide additional coverage), but may do so with different rules, costs and restrictions.

 Part C is not a separate benefit.

Part D (Prescription Drug Coverage)

 Optional outpatient prescription drug coverage provided through private insurance companies.  Buying into Part D depends on your personal drug needs.

 Varies from plan to plan – In 2015, your annual deductible cannot be more than $320. Average national premium is $31.08.

Premiums and deductibles do not apply and copayments will be lower if you are enrolled in Extra Help – a federal program designed to help low-income individuals cover the cost of their prescription drugs.

PH-Specific Coverage  Adcirca®  Adempas®  Letairis®  Opsumit®  Orenitram™  Revatio®  Tracleer®

 High out-of-pocket costs during the coverage gap (see p.10) until you reach a catastrophic limit.  You may be charged an additional, permanent fee if you decline the Medicare Part D benefit when it is first offered to you and then later decide to purchase a Medicare Part D plan.

Medigap

Medigap: Optional Plans to Supplement Original Medicare (Parts A & B) Original Medicare does not cover everything. In addition to retirement options through employers, individuals eligible for Medicare have the choice of purchasing a Medigap (Medicare Supplement) policy that would help cover some of the gaps in Original Medicare's coverage.

Depending on where you live, there are ten standard Medigap plans, A-N, with A generally as the cheapest (offering the least amount of additional benefits) and Plan L as the most expensive (offering more benefits). However, coverage and premiums vary among plans depending on the company you buy it from. *As of June 1, 2010, Medicare introduced two new plans, M and N. Plans E, H, I and J will no longer be offered, but Medicare consumers who already have these plans will be able to keep them.

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SOCIAL SECURITY DISABILITY Social Security Disability (SSD) is essentially an insurance plan that helps to cover medical expenses when you are unable to work. In general, the Social Security Administration (SSA) pays benefits to people who cannot work because they have a medical condition that is expected to last at least one year or result in death. The benefits paid to SSD recipients come from money acquired via Social Security payroll taxes (FICA).

In order to qualify for SSD benefits, you must meet both an earning and disability requirement: 

Earning requirement: Because SSD pulls from money acquired via payroll taxes, to receive benefits you must have worked jobs where you paid into Social Security payroll taxes (FICA) over a period of time. In general, someone who has worked five of the last ten years in a job that deducted SSD taxes is likely to qualify for some benefit.

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Disability requirement: You must also have a medical condition that meets the SSA's definition of disability.

Social Security pays only for total disability, defined by your inability to work.

The SSA considers you disabled if you cannot do work that you did before and SSA decides that you cannot adjust to other work because of your medical condition(s). Additionally, your disability must last or be expected to last for at least one year or to result in death.

Children under the age of 18 are not eligible for SSD, but may be eligible for Supplemental Security Income instead, depending on family income. Some adults over the age of 18, but disabled before the age of 22 may be eligible for child's benefits – paid on a parent’s Social Security earnings record – if a parent is deceased or starts receiving retirement or disability benefits. These beneficiaries must be unmarried.

All beneficiaries undergo the same medical disability assessment.

Applying for Disability Applying for disability can seem like an intimidating process. Many people believe that the Social Security Administration (SSA) will turn you down a few times before you get approved, but this is not true. 30% of applicants get approved on their initial application and following these simple steps can increase your chances of being in this 30%.

It is strongly advised that you retain a lawyer or non-lawyer representative to help you through the process. They should be able to help you present evidence and testimony in a persuasive and organized fashion. The Caring Voice Coalition (CVC) – www.CaringVoice.org or 1-888-267-1440 – can provide PH patients with SSD guidance from beginning to end.

It can take a long time to process an application for benefits (three to five months, depending on your state), so please do not delay applying – contact PHA or a CVC representative as soon as you become disabled.

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*Note: The following information was written as a general guide to explain the SSD process. Again, we encourage you to seek a representative to help you with the following steps – building your case, gathering additional information, filling out and submitting the application, and double-checking and following up.

Build Your Case Start keeping detailed records that recount your personal experience with pulmonary hypertension, or any other debilitating disease:     

Keep a diary of your day to day activities and emotions.

Keep a record of all medication and medication changes, any restrictions you may have and how often you take the medications.

Keep a log of how much time you spend traveling to and from the doctor or clinic and how much time you spend at the doctor's office.

When something is wrong, don’t delay in seeking the doctor’s advice – or speaking with the nurse – so it will be entered into the medical records. And, make sure you follow their medical advice.

Record and keep copies of all of your correspondence with SSA.

Gather Additional Information While you are recording your personal experience, you should also be gathering additional information to submit in the disability application. You will need:    

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Social Security number and proof of age (birth or baptismal certificate).

Names, addresses and phone numbers of doctors, hospitals, clinics and institutions where you have been treated, as well as dates of treatment. You will also be asked for your patient/chart number from each doctor's office. You can get this information by calling the various offices.

Names and dosages of all medications you are taking.

Medical records – everything you can get your hands on, including lab work, x-ray reports, echocardiograms, sleep studies, CT scans of the chest, arterial blood gasses and angiograms. The primary treating physician's opinion carries the most weight. Have your doctor do a complete examination and write a letter explaining your condition in detail; the SSA has their own template form they require your primary physician to fill out.

Summary of your employment history. If you have a resume, you can use this for the initial application. You will then receive a second work history form that will require more in-depth information.

Your most recent tax return.

Fill Out and Submit the Application When you are filling out your application, remember that you are putting a presentation together and not just answering questions. Here are a few tips:   

Do not understate your condition, but do not overstate it either.

Fill out every question in detail on the forms and make sure that you are answering the question being asked.

Be descriptive about your condition and how it affects your life.

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Double Check and Follow Up After anyone else has helped you fill out forms, whether it’s SSA or a representative like Caring Voice Coalition, ask Social Security for printouts of everything that was submitted right away. Then proofread them carefully to make sure the written reports match the truth of your case and include all medical evidence about your condition.

Regardless of how astute and professional your representative is, there is still room for misinterpretation between what you say and what someone else hears. Take the trouble to get it right before the evaluation begins. It will save far more time, effort and delay down the road.

Disability Approvals If your application is approved, you will receive a letter that states the amount of your benefit and when your payments will start – either on the sixth full month after the date the SSD finds that your disability began or the first month after your approval (if your approval takes longer than five months). It is important to note that Social Security benefits are paid in the month after the month for which they’re due. If your application is not approved, the letter will explain why and will tell you how you can appeal. See page 24 for information on how to appeal a denial.

Example: If your disability began on January 15, 2010, your first benefit would be paid for the month of July 2010, the sixth full month of disability. You would receive your benefit payment in August 2010.

The amount of your monthly disability benefit will vary depending on your average lifetime earnings. The Social Security Statement you receive each year displays your lifetime earnings and provides an estimate of your disability benefit based on a weighted formula of the amount of taxes you have paid over the years. It also includes estimates of retirement and survivors benefits that you or your family may be eligible to receive in the future.

Benefits usually continue until you are able to work again on a regular basis. There are also a number of special rules called work incentives that provide continued benefits and health care coverage to help you make the transition back to work if you are able. See page 18 to learn more about working with disability If you are receiving SSD benefits when you reach full retirement age, your disability benefits automatically convert to retirement benefits but the amount remains the same.

Your Medicare benefits (Part A and B) will begin 29 months after the onset date, or 24 months after you receive your first benefit check. See page 7 to learn more about Medicare.

Disability Determination The SSD Determination Process After you submit your application, the Social Security Administration (SSA) will review it to make sure you meet their basic program requirements. For Social Security Disability (SSD) applicants, they will check whether you have worked enough years to qualify. For SSI applicants, they will check to see that you meet the income qualifications.

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If you meet these requirements, the SSA will send your application to the Disability Determination Services office in your state. The state agency completes the disability decision by compiling your medical records and following a five-step process to decide.

Compassionate Allowances The Compassionate Allowance Program is a list of medical conditions (currently consisting of 224 conditions) considered so severe that, once an applicant's medical condition is confirmed by the SSA, s/he will automatically qualify for SSD. This allows the SSA to more quickly provide benefits to the most obviously disabled individuals.

PH is currently not included in the Compassionate Allowance Program, but PHA is actively advocating for the inclusion of “pulmonary arterial hypertension – with NYHA/WHO class IV symptoms and/or severely reduced exercise capacity” in the list of Compassionate Allowances.

Regular SSD Reviews Once you are determined to be disabled, you will remain on SSD unless you earn too much or your health improves. The SSA will review your condition every 18 months to seven years, depending on if your condition is expected to improve and to what extent.   

If your condition is expected to improve, your review will probably occur about every 18 months If your condition might improve, your review will probably occur about every 3 years If your condition is not expected to improve, you should expect a review no sooner than 7 years

Most PH patients should expect review every 3 to 7 years. An exception is if you had a transplant before your disability claim was approved; your claim will likely be reviewed about a year later to see how you are doing.

Disability Appeals If you have been denied SSD or SSI, you still have the right to make an appeal. In fact, you have the right to make several appeals, if necessary. While many applicants get approved based on their initial applications, many others receive benefits only after going through the appeals process, so don’t give up.

There are time limitations on every step in the appeals process. In general, if you disagree with a decision you will want to request the next level of appeal as soon as possible.

Step 1: Reconsideration If you disagree with the initial determination regarding your eligibility for benefits or if the SSA changes your benefit amount and you disagree, you can appeal through reconsideration.

How: Request reconsideration by sending SSA a signed note with your Social Security number stating that you wish to appeal the decision. Or, complete Form SSA-561 (Request for Reconsideration) or Form SSA-789 (Disability Cessation Appeal).

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When: Make the request within 60 days of the date you receive the written notice of initial determination. If you request reconsideration within 10 days, any payment being made to you will continue until a determination is made, provided your income and resources do not exceed SSA’s limits.

Reconsideration will take approximately 90 days to complete Step 2: Administrative Law Judge (ALJ) Hearing If you disagree with the reconsideration determination, request a hearing before an ALJ. You may review your file, submit new evidence and present your own testimony at the hearing. The judge may also want you to have additional medical exams and tests completed.

Because these hearings are done in-person, it is important that you attend or you may lose your appeal rights and benefits. If you cannot make the hearing, contact the judge as soon as possible before the hearing and explain why.

How: Either write to the SSA and requesting an ALJ hearing or complete Form HA-501 (Request for Hearing).

When: Make the request within 60 days after you receive the notice of reconsideration.

ALJ hearing will take approximately 530 days to complete.

Step 3: Appeals Council If you disagree with the judge’s decision, you may request an Appeals Council review but the Appeals Council will select which cases it wishes to hear. You may also submit new evidence here.

How: Either write to the SSA and requesting an Appeals Council review or complete Form HA-520 (Request for Review of Hearing Decision/Order).

When: Make the request within 60 days after you get the hearing decision.

Appeals council will take approximately 220 days to complete.

Step 4: U.S. District Court If you disagree with the Appeals Council, you may file a civil action with the U.S. District Court in your area. The court will decide whether to overrule the SSA’s decision by granting you benefits, or, more often, by remanding the case (sending it back) to the ALJ for reconsideration. The SSA will no longer be able to help you at this level. All necessary forms can be found on the SSA’s website – www.SocialSecurity.gov/forms.

Federal court will take approximately 540 days to complete.

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Working with Disability Contributed by Alan Harder, PH Caregiver and former SSA Employee *This article cannot replace a direct conversation with the Social Security Administration (SSA). If you have returned to work, or are thinking about returning, it's very important to get in touch with your local SSA office. Be comfortable making that contact without worrying that something terrible will happen; nothing can replace the tailored advice you'll receive from SSA while they are looking at your own record.

One myth is that you can't work at all while drawing disability benefits. This is false, both for SSD and SSI. It's the "cannot work at all" part that makes it so wrong. Going back to work does not automatically stop benefits under either program.

In fact, the SSA has many built-in incentives to encourage you to go back to work. Just remember to include SSA in your planning; you'll find them to be a strong ally.

An Overview: Working While Disabled The Social Security Administration (SSA) has many built-in incentives, such as their Ticket to Work program, to encourage you to return to work. If on SSD, you can earn up to the amount SSA considers “gainful employment” ($1,090/month in 2015) without losing benefits. If you are on SSI, payments are made based on income. If you earn more than the SSI income limits, then your benefits will end.

How It Works For both SSD and SSI recipients, the SSA will provide training and assistance to help you return to work.

If you receive SSD:    

Your cash benefits can usually be continued during a trial work period for a year or more, regardless of the amount you earn.

Medicare coverage can continue, even if cash benefits stop.

Benefits can resume without a new application if your earnings drop within three years after your trail work period ends.

Benefits can be reinstated without a new medical evaluation if your work stops within five years after your entitlement ended and you are still disabled by the same medical condition.

If you receive SSI:    

Only parts of your wages are subtracted from your benefits.

If your Medicaid coverage was based on SSI, it may continue even after SSI cash benefits stop.

Benefits can be reinstated without a new medical evaluation if your work stops within five years after your last check and you are still disabled by the same medical condition.

You may be able to exclude some income and resources if you need them to support a Plan for Achieving SelfSupport (PASS) – a plan to help individuals with disabilities return to work.

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The work incentive provisions only apply after your SSD or SSI benefits start. If you return to work for substantial wages ($1,090/month in 2015) while your claim is in process, your claim may be denied before your disability has been confirmed through medical evaluation. It is hard for them to conclude that you are so disabled that you can't earn a substantial wage, while at the same time, you are doing just that.

Checks and Balances There are limitations on what you can earn and keep when you are also collecting SSD. Check and double check that you are not earning over the income limit ($1,090/month). If you are overpaid by your employer, you may have to return money to SSA. SSA looks at employer reports as part of their fraud prevention efforts, but not right away. So, although your employer will turn in your wages, SSA ordinarily will not realize – and therefore cannot let you know - if you're making more than the allowed income, until your employer sends a W-2 report the next year. The SSA’s computer match may even be months after that.

While Social Security is very supportive and helpful of attempts to work when you tell them up front, efforts to conceal work can bring many unpleasant results. Just play it straight.

Your Disability Rights It is important that you know your rights if you are a recipient of any Social Security services, whether Social Security Disability (SSD) or Supplemental Security Income (SSI).

Right to Receive Help If the process of applying for SSD or SSI seems intimidating, it is important to remember that you have the right to receive help in applying for SSI. The Social Security Administration (SSA) will help you get documents you need to show that you meet the SSD or SSI requirements. If you are applying for disability or blindness, Social Security will pay to have a doctor examine you if they decide that medical information is needed to make a decision. SSA will also pay your travel expenses to get his exam.

Right to Representation You may appoint someone to help you with your SSD or SSI claim. The representative does not have to be a lawyer – people often appoint family members to assist them.

Right to Notice The SSA will notify you in writing of any determination about your eligibility or any change in your benefit amount. Each notice will explain your appeal rights.

Right to Examine Your File You or your representative may examine and get a copy of the information in your case file, upon request.

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TROUBLESHOOTING INSURANCE PROBLEMS Claims, Appeals & Complaints Insurance companies can be selective when it comes to paying for benefits. If you find that you are facing obstacles accessing your treatment and benefits, don’t wait to take action — get started now. Outlined below are a series of general steps you can take to ensure that your insurance company will cover the treatment you need.

Prior authorization is when your health insurance plan requires approval for certain medical services or treatments before the services or treatments are rendered (see p.21).

Not all services require prior authorization.

Step therapy is a requirement that less costly and less risky treatment alternatives be explored and deemed unsuitable before more uncertain or expensive therapies are approved (see p.21).

Receive treatment (Prescriptions or Medical Services) Every time a service is rendered, either the medical provider or you must retroactively file a claim for the payment of service, providing the insurance company with detailed information about the services you received.

If your insurance company denies your claim Make an appeal and request a re-evaluation of a claim of service that your insurance company denied (see p.24). An initial denial is not final and may be overturned if you appeal.

If you reach your benefit limit or lifetime cap Apply for a limit override if there is sufficient medical need, or petition your plan to consider a higher level of coverage.

File a grievance if your claim is denied because the service or products are specifically not covered by your health plan (see p.26).

You also can file a grievance as a formal complaint (either to your insurance company or an outside regulatory body) regarding any aspect of the services provided by your healthcare plan.

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UTILIZATION MANAGEMENT: PRIOR AUTHORIZATION & STEP THERAPY What is prior authorization?

When your health insurance plan requires approval for certain medical services or treatments before the services or treatments are rendered, this is called prior authorization. Prior authorization requirement will vary from plan to plan.

What is step therapy?

Step therapy is a requirement that less costly and less risky treatment alternatives be explored and deemed unsuitable before more uncertain or expensive therapies are approved.

Why do some companies require prior authorization & step therapy?

Insurance companies use benefit management as a way to ensure that the prescribed treatment is medically necessary.

In other words, the insurance company does not want to pay for a medical procedure that is not really needed. Through prior authorization and step therapy, your insurance company can learn more about your health condition and why the treatment is needed before they decide whether to cover or pay for it.

How do I obtain or know if I need to obtain prior authorization or approval?

Prior authorization can seem like an unnecessary and aggravating reality when it comes to accessing your treatment.

However, there are some steps you can take to streamline the process. If you suspect or know that you will need to get your medical services or treatment approved before you can receive them, take action now: 1. Call your insurance company.

Because each insurance company has a unique prior authorization process and step therapy process, the only way to know if your insurance company requires approval for a particular treatment beforehand is to call and ask.

When calling to inquire about prior authorization, be sure to ask the following questions: 

     

Does my plan require prior authorization for coverage of this particular service or product? For example, does my plan require prior authorization for an infusion pump? Do I have to get prior approval for my Bosentan prescription?

How do I get something prior authorized? What is the process? Who must make the prior authorization request – physician, patient, nurse?

What is the address, fax number or phone number to call to send the request to?

What documentation should be included? Be sure to ask what paperwork or proof they will need.

How long will it take for a decision to be made? If they say they are "not sure," ask, "How long does it usually take?"

If prior authorization is given, how long is it approved for or when will the approval time “expire?”

How will I find out if it has been approved or not?

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2. Make your medical providers aware and seek their assistance. The decision to cover a treatment is based on information that your doctor or nurse gives them. For some programs, your doctor may have to call or send a special letter called a "Statement of Medical Necessity" or "Letter of Medical Necessity� that justifies the service rendered as reasonable and appropriate for the diagnosis or treatment of a medical condition or illness. It is often helpful to include a letter of medical necessity from your physician, even if your company does not require it.

3. Follow up in writing after speaking with a health plan representative on the phone. Keep your correspondence simple and to the point. Include relevant dates, names of representatives with whom you spoke and their message to you. Also be sure to include your name, policy number and any other identifying information.

4. Carefully follow the steps outlined by your health plan. Otherwise, your request could be delayed or even denied.

INSURANCE CLAIMS What is a claim?

In order for an insurance company to reimburse your provider for the medical services you receive, either you or your health care provider must submit specific information to your insurance company. This information is referred to as a claim.

Who submits the claim?

For medical procedures or services: The medical provider typically submits the claim. Your medical provider will need to fill out the appropriate claim form with patient demographic information, insurance information, descriptions of services and associated billing codes that describe the procedure or service as required by the insurance company, provider information and dates of service.

For prescription drugs: Your pharmacy or specialty pharmacy provider will typically submit a claim to your insurance company. Claims submitted for prescription medications provided in outpatient pharmacies usually require a drug's specific National Drug Code (NDC) number and the name of the drug. NDC is a national classification system used to identify drugs.

If you are required to submit the claim form, your pharmacist can provide you with the NDC number that you should include on the claim form.

Will I ever be required to submit a claim?

If your plan requires that you pay for medical services up front and submit a claim for reimbursement, you will probably be required to submit your claim yourself.

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How do I submit a claim?

If your plan requires that you pay for medical services up front and submit a claim for reimbursement, you will probably be required to submit your claim yourself. Contact your insurance company to obtain information on how to file the claim correctly or to request the proper claim form. If filing a claim for a medical procedure/service or prescription drugs, many health plans require that you complete a claim form.

1. Determine the type of claim form your insurance plan requires. If necessary, contact your insurance company's member services department for guidance.

2. Obtain and complete the correct claim form from the customer service department of your insurance company or your employer. Be sure to include:      

Patient's full name, address and phone number Patient's Social Security number Patient's date of birth and gender Policy and group number Policy holder's name, if different from patient Policy holder's relationship to patient

3. Attach a copy of any requested supporting information to the claim form.

4. Check claim form for completeness and accuracy. Be sure to sign the claim form.

5. Make a copy of the claim form and all attachments (i.e., receipts, medical records, etc.) for your records.

6. Mail the claim form and all attachments to the claims department of your insurance company.

If you are required to submit a claim form for pharmacy benefits, your pharmacist can provide you with the National Drug Code that you should include on the claim form.

How do I check my claim status?

Your claim can take four to six weeks to process. If payment has not been received within six weeks of submission, you should call your insurance company to check on the status of your claim. The customer service department is the best place to start.

Before you call, be sure to have your date of service, the type of service received (or the name of the drug), the name of the provider that performed the service or dispensed the medication, the total charge submitted for reimbursement, the policy number (from your insurance card), the name of the person insured and the insured’s date of birth.

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THE APPEALS PROCESS What is an appeal?

An appeal is a request to your insurance company for review of a denied claim or service. A denial by your insurance company indicates that they have decided not to pay for the claim or service recommended by your physician. Even if you follow prior authorization and claims submission processes accurately, your insurance company may still deny your request for coverage.

How do I know if my claim has been denied?

If you have received services and the claim is denied, you and/or your medical provider should receive an Explanation of Benefits (EOB). If a portion of the claim was denied, there will be an explanation detailing the reason for the denial. If a prior authorization is denied, you and/or your medical provider should receive a letter stating the reason for denial.

Carefully review these statements and use them to assist with submission of an appeal.

Why would my insurance company not cover my treatment?

There are numerous reasons that insurance companies may deny services or claims. It is important to review the reason your claim is denied as it helps you determine your next steps.

Here are some of the most common scenarios for service or claim denials you may encounter: 

Services are not covered by your health plan Some insurance companies will not cover specific services, health care providers or types of treatment. This is known as benefit exclusion. The most common exclusion obstacle faced by PH patients is that their drug is not on their plan’s formulary, the limited list of drugs subject to coverage under the plan.

You will want to call your insurance company to verify the services they show you have received and/or the coverage exclusions of your plan. Review this information with your provider to ensure the service was filed correctly and determine your next steps for appeal.



Medical necessity was not established A prior authorization or claim may be denied if the insurance company does not feel that the service you are requesting or received is appropriate for your condition and/or diagnosis. Many health plans require you to try several treatment options prior to covering more costly alternatives.

Work with your provider to collect all previous medical history and chart notes to submit with an appeal in support of the reason for the prescribed service. Documented proof of medical history will support any information you provide in a letter to the insurance company. Try contacting the manufacturer of the product you are being prescribed, as they can often provide you with a copy of the package insert and results from the clinical trials. This information can help demonstrate efficacy and possibly cost effectiveness compared to other treatments.

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

Prior authorization was not obtained Insurance companies may require individuals to obtain a prior authorization before receiving a medical service.

If this is not completed, you may receive an Explanation of Benefits (EOB) that states that the service/claim was denied because prior authorization was not obtained.

Some insurance companies will allow physicians to request a retroactive authorization. This will allow the insurance company to authorize treatment back to the time when your service was rendered. Be sure that you or your provider then requests that the denied claim be reprocessed referencing the authorization for correct payment.

If you have obtained prior authorization for a service and the claim is denied, provide copies of the authorization letters to your insurance company to show that proper procedures were followed.



Claim was filed incorrectly Many insurance claim denials occur due to filing and/or processing errors. Many times this is not easily recognized because the denial reason on your EOB will not specify that there was any filing or processing error.

You and/or your health care provider will need to work very closely with the insurance company to ensure that the services they show you received match those for which you and/or your physician billed. Also, be sure to have them check the diagnosis code, as this could also affect the services that are/are not covered.

How do I make an appeal?

1. Call your insurance company regarding the denial. The process for appealing a denial will vary among health plans, but here are some general things to remember when calling: a. Request a copy of the denial if you do not already have one. b. Inform your insurance company that you wish to appeal their denial. c. Ask about the appeal process – what the process is like, who must initiate the appeal (your or your provider) and how long will it take?

2. Write an appeal letter. In most cases, you or your physician (or physician's staff) will be required to write an appeal letter. The purpose of an appeal letter is to tell the insurance company that you do not agree with their decision and the reason you believe the service or claim should be covered. In this letter, be sure to include: a. Your insurance information (e.g., policy and group number), so that your account is easily identifiable. b. A summary of the denial based on the denial letter you received c. Your medical history related to your diagnosis (your physician may be able to provide information from your medical chart) d. Any medical treatments previously tried for the conditions and the results e. An explanation of why your insurance company should reconsider their denial and approve coverage

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A letter of medical necessity from your doctor may or may not be required with your appeal. If this is required or recommended by the insurance company, they may also request copies of your medical records to accompany the letter of medical necessity. Even if not required, a letter from your physician can be very helpful in supporting your position. No matter what type of insurance you have, it is your right to appeal a denial.

3. Copy your appeal for your own records 4. Submit your appeal, including any additional letters 5. Call your insurance company to confirm receipt of your information and inquire how long it will take them to review the appeal and make a decision. Based on the time frame they provide, you will want to follow up periodically to check on the status of your appeal.

6. Request a copy of the denial letter if your appeal has been denied. This letter should include an explanation of the reason for denial and may even request additional information. The letter should also provide guidelines on further steps if you would like to appeal this decision.

If you feel as though your insurance company should cover your treatment, even after it has been denied, you can file a grievance with the Department of Insurance.

GRIEVANCE & COMPLAINTS You should file a grievance with your insurance company if:  You have a claim denial due to specific benefits exclusions or restrictions.  You want to file a formal complaint regarding any aspect of the services provided by your healthcare plan.

As with the appeals processes, the process for filing a grievance will vary from health plan to health plan. Be sure to call your health plan's customer service department to obtain the specific details on how to file a grievance.

For tips on communicating with your insurance company, see page 29.

You should file a complaint with your state’s Department of Insurance if:  Your insurance company has denied you medical service(s) or treatment that is covered or that you feel should be covered in your plan.

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DEPARTMENT OF INSURANCE When should I contact my state’s Department of Insurance?

Recruit the help of your state’s Department of Insurance if your insurance company has denied you medical service(s) or treatment that is covered or that you feel should be covered in your plan.

What is the Department of Insurance?

The Department of Insurance is a state-based regulatory agency that oversees and enforces state insurance laws. It serves insurance consumers by regulating the industry’s practices and encouraging a healthy marketplace.

How do I file a complaint with my state’s Department of Insurance?

1. Gather the appropriate information.

Before you call or write the Department of insurance, you should be prepared with:        

Written permission to speak to your insurance company on your behalf (if you call in) A copy of your insurance card Pages of the summary plan description or benefit booklet regarding coverage of denied services Your medical information from your physician as well as any supporting medical information such as tests, lab work, x-rays, hospitalization information and any information regarding other medical conditions Appeal information Denial letter(s) Notes on any calls you have had with your insurance company Anything else you feel is important to your complaint

Note: Every Department of Insurance requires different complaint information. Refer to your state’s Department of Insurance website for specific directions. Call them and ask what information you will need to provide if you do not have access to their website.

2. Contact your Department of Insurance 

Call your Department of Insurance if the appointment date for the service(s) or treatment that has been denied will happen soon. If you expect to receive your treatment within the next month, you should call.

Most of the time, they will try to help you over the phone if they can.

When calling you will want to state your situation, what has happened (i.e. what services/treatments are being denied) and what you think needs to be done. The Department of Insurance is there to help you, but don’t be afraid to assert your rights as an insurance consumer.

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

Write to the Department of Insurance or submit an online complaint if your situation is not immediate.

For example, if you are on a medication that works but your doctor wants to add another treatment and your insurance company is denying the request.     

Include all the documents listed in Step 1.

Give each item you are submitting with your complaint an item number (and letter if a document has more than one page).

Include the item number, a description of the item, along with the number of pages, in the body of your complaint letter.

Make a copy of all the information you include with your letter before sending it.

Include a daytime telephone number and email in your complaint letter so they can contact you if they need clarification.

Remember, if you have specifics questions you should include them in the complaint letter! The Department of Insurance will investigate and find answers to your questions.

For tips on communicating with your insurance company, see page 29.

3. Follow up with the complaint After you file a complaint, the Department of Insurance should send you an acknowledgment letter stating that they have received the complaint, a summary of the complaint and a time frame for when they expect to have resolved issue. If this is too long for you, call them and let them know why.

Each Department of Insurance will have a different response time, but on average if you do not hear back from them within 2-4 weeks (or sooner if it’s an emergency) you can call to make sure they received your complaint.

What happens after I file a complaint?

Regardless of the complaint, the Department of Insurance will investigate it. If they cannot provide a solution, they will at least provide you with a detailed explanation of why your coverage was denied.

For example, they may state that a treatment/service is not mandated under state or federal law. For most people, their treatment/service is denied because they did not show proof of medical necessity. If this is the case, the Department of Insurance will provide a detailed explanation as to why.

If the Department of Insurance provides you with documentation from the insurance company stating that the requested treatment/service is not a covered benefit, go back and check that this documentation matches the information you have in your benefit package.

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COMMUNICATING WITH YOUR INSURANCE COMPANY In taking charge of your own healthcare needs, knowing your insurance benefits and communicating effectively will optimize your chances of having your medical care covered. The following easy tips will help you communicate effectively with your insurance company: 

Be confident when calling your insurance company. As a valued customer, you have the right to obtain complete information regarding your health benefits. Your insurance company's customer service representatives are there to assist you. Part of their job includes answering questions to your satisfaction.



Communicate clearly and calmly. Remember that your ultimate goal is to gain coverage for your healthcare and pulmonary hypertension-related treatments. If you are met with resistance, simply restate your request.



If at first you don't succeed, try, try again. If you have tried discussing your request with your health plan's customer service representative but are not satisfied with how your insurance matter was handled, ask to speak to: a. A supervisor in the Customer Service department b. The manager or director of Customer Service or Member Services



Know your benefits. Health insurance can be complicated. Be sure you know the benefits to which you are entitled under the provisions of your policy. If you do not fully understand something, ask your insurance representative or your employer's benefits administrator.



Document all communication with your insurance company. Be sure to keep detailed, written records of each conversation you have with your insurance company representatives. Record the date the conversation took place, the first and last names of the representative with whom you spoke and make notes regarding any information that was provided to you. Also remember to keep copies of all written correspondence between you and your insurer.



Follow up in writing after speaking with a health plan representative on the phone. Keep your correspondence simple and to the point. Include relevant dates, names of representatives with whom you spoke and their message to you. Also be sure to include your name, policy number and any other identifying information.



Do not hesitate to request assistance from your employer's Human Resources department and your physician(s). In many cases, your employer makes decisions about what will and will not be covered under your health plan. Your employer's support can result in the approval of your request for coverage. In addition, having your physician contact your health plan representative can also be helpful since he/she can speak to the necessity of the requested medical products or services for your overall health.

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

Carefully follow the steps outlined by your health plan for requesting prior authorization, submitting claims or filing appeals. Otherwise, your request could be delayed or even denied.



Advocate at all levels. Write to your state health insurance commission, Department of Insurance and/or your state and federal elected officials and enlist their help by informing them of your health needs and situation with your health plan insurance claim. Notify your insurance company again that you have requested help from the state Department of Insurance and other agency representatives in resolving difficulties in meeting your healthcare needs.



Utilize the additional resources that are available. There are a variety of organizations (see p.31) that can provide you with assistance with insurance issues. These organizations may be specific to your therapy or specific to your disease state. Remember to enlist their assistance for additional advocacy support.



Be persistent! Remember that a denial is not necessarily the final word. Ask your insurance company to reconsider their decision and follow-up to make sure they are taking action.

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FINANCIAL ASSISTANCE General Assistance Programs Some organizations offer general or disease-specific financial assistance programs to help you cover your medical costs: 

Caring Voice Coalition (CVC) – www.CaringVoice.org or 1-888-267-1440 – provides financial help to eligible patients. Caring Voice Coalition may pay all or a portion of a patient’s out-of-pocket expenses under the patient’s health insurance plan. Please note that they are only able to help with either your medication copay or your monthly COBRA premium. See page 3 for more information on COBRA.



Patient Advocate Foundation – www.copays.org or 1-866-512-3861 – provides direct financial support to insured patients, including Medicare Part D beneficiaries, who must financially and medically qualify to access pharmaceutical co-payment assistance. The program offers personal service to all patients through the use of call counselors; personally guiding patients through the enrollment process.



Good Days from CDF – www.GoodDaysFromCDF.org or 1-877-968-7233 – helps underinsured patients with chronic disease, cancers or life-altering conditions obtain the expensive medications they need. CDF assists patients throughout the U.S. who meet income qualification guidelines and have private insurance or a Medicare Part D plan, but cannot afford the copayments for their specialty therapeutics.

Drug-Specific Patient Assistance Programs (PAPs) and Support Programs Many pharmaceutical companies or specialty pharmacies sponsor drug-specific assistance programs to help patients navigate the reimbursement process.

PAPs are designed to make it as easy as possible to get your treatment by providing free or discounted drugs to lowincome, underinsured or uninsured patients who meet specific guidelines. Manufacturers may also offer other types of general support programs, providing additional education, support and financial assistance.

Manufacturers: Adcirca Adempas Flolan Letairis Opsumit Orenitram Remodulin Revatio Tracleer Tyvaso Ventavis Veletri

877-UNITHER 888-84-BAYER 888-825-5249 866-664-LEAP 866-ACTELION 877-UNITHER 877-UNITHER 800-TRY-FIRST 866-ACTELION 877-UNITHER 866-ACTELION 866-ACTELION

Specialty Pharmacies: Accredo/ ExpressScripts BriovaRX Cigna Tel-Drug CuraScript CVS Caremark OptumRx RightSource Walgreens/Medmark:

866-FIGHTPH 855-4BRIOVA 855-326-7463 866-4PH-TEAM 877-242-2738 855-856-0536 855-478-8405 888-347-341

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ADDITIONAL INSURANCE RESOURCES Financial Assistance NeedyMeds – www.NeedyMeds.org or 1-800-503-6897 – is a nonprofit organization that helps patients who cannot afford medication or healthcare costs by connecting them to Patient Assistance Programs, government assistance programs, free clinics and other patient advocacy organizations that provide financial assistance. All information is free, easy to access and updated regularly.

NeedyMeds also offers a drug discount card that provides patients with discounted rates on certain prescription medicines not covered by insurance. Although you will not be able to save on PH-specific medications, this card may help you save on other prescription drugs. (This card is not valid for Medicaid or Medicare patients, including Medicare Part D or other state or federal programs.)

For Children Insure Kids Now! – www.InsureKidsNow.gov or 1-877-KIDS-NOW (543-7669) – is a national campaign to link the nation's 10 million uninsured children – from birth to age 18 – to free and low-cost health insurance.

Legal Assistance Medicare Rights Center – www.MedicareRights.org or 1- 800-333-4114 – is a national nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives.

National Organization of Social Security Claimants' Representatives – www.NOSSCR.org or 1-800-431-2804 – is an association of over 3,900 attorneys and other advocates who represent Social Security and Supplemental Security Income claimants. Members are committed to providing high quality representation for claimants, to maintaining a system of full and fair adjudication for every claimant, and to advocating for beneficial change in the disability determination and adjudication process.

The Jennifer Jaff Center – www.TheJenniferJaffCenter.org or 1-860-479-2518 – provides information, advice and advocacy regarding retrieval of medical information, obtaining and keeping health insurance, obtaining coverage for your treatment, applying for SSDI and asserting your rights.

Miscellaneous PHA and Caring Voice Coalition (CVC) have teamed up to create the Specialty Pharmacy Feedback Form – an opportunity for you to let your specialty pharmacy know what they’re doing well and where they can improve. Submit your complaints, suggestions and praise at www.PHAssociation.org/SpecialtyPharmacyForm

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GLOSSARY OF INSURANCE TERMS Actuarial Value (AV) – the average value of the benefits that a certain health plan covers, calculated as a percentage of total costs. For example, if the actuarial value of a plan is 75, then the consumer will pay 25 percent of the costs of the benefits he or she receives. Actuarial value is an average for a population with a range of patients, so it does not always accurately reflect the cost sharing of each individual. Actuarial value is used to rank insurance plans in the insurance marketplaces so that consumers have a general sense of the coverage offered by plans. The ranking has four tiers— bronze, silver, gold and platinum—with platinum plans having the highest actuarial value.

Affordable Care Act (ACA) – the comprehensive health care reform law enacted in March 2010. The law was enacted in two parts: The Patient Protection and Affordable Care Act was signed into law on March 23, 2010 and was amended by The Health Care and Education Reconciliation Act on March 30, 2010. The name “Affordable Care Act” is used to refer to the final, amended version of the law.

Appeal – after insurance issues a denial of coverage for either a claim or a request for prior authorization, you submit written information to justify why a service should be covered; this is called an appeal. The appeals process generally has 2-3 levels.

Benefit Exclusion – when a plan refuses to cover certain health care providers, services or products. The most common exclusion obstacle faced by PH patients is that their drug is not on their plan’s formulary, the limited list of drugs subject to coverage under the plan. Most plans establish steps – called an exception process – which you can take to petition for certain health care benefits.

Benefit Limitation (Benefit Cap) – a limit set by the insurance company on the amount of money (cost limit) or product that they cover (quantity limit). a limit set by the insurance company on the amount of money (cost limit) or product (quantity limit) that they cover. Benefit limitations can be for different time periods: annual or lifetime. However, under the Affordable Care Act, it is now illegal for insurance companies to impose lifetime caps. Starting 2014, it will also be illegal for insurance companies to impose annual caps.

Cost Limit – a limit on the amount of money an insurance company will pay for benefits. For example, you may have prescription coverage up to $2,000 per year. If you have spent more than $2,000 in prescription costs, your insurance company will not cover additional prescription costs for the rest of the year.

Quantity Limit – a limit on the number of services, prescriptions, or products allowed over the course of a particular benefit period. For example, you may have a limit of three prescriptions per month.

Benefit Management – a process, such as prior authorization or step therapy, through which a suggested treatment plan must be reviewed and approved before it is implemented.

Case Management – a planned approach to manage services or treatment for an individual with a serious medical problem. Its dual goal is to contain costs and promote more effective interventions to meet the patient's needs.

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Catastrophic Coverage – coverage provided by the insurance company after the beneficiary has personally paid a certain amount of medical expenses out-of-pocket as predetermined by the payer.

Certificate of Coverage – document that specifies the benefits issued to a member of group health insurance. This can change yearly depending on what an employer group elects to purchase.

CHAMPVA – a health benefit program for the families of veterans with 100 percent service–connected disability and surviving spouse or children of a veteran who dies from a service-connected disability.

Children's Health Insurance Program (CHIP) – an insurance program jointly funded by state and federal government that provides health insurance to low-income children and, in some states, pregnant women in families who earn too much income to qualify for Medicaid but cannot afford to purchase private health insurance coverage.

Claim – information submitted to the insurer by the member or health care provider for the payment of services under a policy.

Coinsurance – the percentage of allowed charges for covered services that you are required to pay. For example, the health insurance may cover 80% of charges for a covered hospitalization, leaving you responsible for the other 20%. This 20% is known as the coinsurance.

Consolidated Omnibus Budget Reconciliation Act (COBRA) – a federal law that allows individuals leaving a company to continue the health insurance policy they had when employed. COBRA applies when individuals lose or leave a job. The individual is allowed to pay group rates plus a set administrative fee, usually for up to 18 months.

Coordination of Benefits (COB) – method of integrating benefits payable under more than one health insurance plan so that the insured’s benefits from all sources do not exceed allowable medical expenses.

Copayment (Copay) – a set amount determined by the insurance company that you pay when you receive covered services. For example, you may have a copayment of $15 every time you visit your Primary Care Physician.

Cost Sharing – the term that insurance plans use to describe costs they “share” with the beneficiary. Because the beneficiary has to pay out of his or her own “pockets,” these costs are also often known as out-of-pocket costs. The most common forms are deductibles, copayments, and coinsurance.

Creditable Coverage – drug coverage that pays, on average, as much as or more than the standard Medicare Part D drug coverage. Insurance companies are required to inform beneficiaries of whether their coverage is creditable. If a patient’s drug coverage is considered creditable coverage, then the patient is not required to purchase Part D coverage once they become eligible for Medicare and can enroll in a Medicare Part D plan without penalty after the initial enrollment period.

Deductible – the amount of money that you have to pay before your insurance plan pays for any medical care or prescriptions. Deductibles can vary between the insured and eligible family members. An individual deductible would P a g e | 34 www.PHAssocation.org/Insurance

need to be paid before the insurance company will pay for medical care. If the whole family is covered under one family member's insurance, then a family deductible is the amount of money that the entire family would have to pay first before the health insurance company would pay or reimburse for medical care or prescriptions.

Department of Insurance – a state-level regulatory agency that oversees and enforces state insurance laws. Each state has their own Department of Insurance, generally designed to serve consumers in a professional and timely manner by regulating the industry’s practices and encouraging a healthy marketplace.

Durable Medical Equipment (DME) – medical equipment that can withstand repeated use, is not disposable, serves a medical purpose, is generally not useful to an individual in the absence of sickness or injury and is appropriate for use in the home. For Medicare beneficiaries, DME - such as home oxygen - is covered under Medicare Part B. Employee Retirement Income Security Act (ERISA) – a federal law that governs pension plans and private health insurance provided by self-funded institutions (employers or organizations who pay for medical bills out of their own funds). ERISA requires insurances providers to disclose plan benefits and funding levels, as well as ways to manage and access your benefits. ERISA also provides certain rights, such as the right to appeal a denial of benefits and a right to judicial remedies.

Essential Health Benefits (EHBs) – a set list of benefits that insurance plans must include if they are sold through a state’s health insurance marketplace. EHBs will be required beginning in 2014 and are intended to eliminate major benefit gaps currently present in many small plans. For example, the Department of Health and Human Services estimates that 62 percent of individual health insurance plans currently lack maternity care coverage, which will become a required benefit in 2014.

Exception Process – steps outlined by your insurance company that you can take to petition for certain health care benefits ordinarily not covered on your insurance plan. If you and/or your doctor are able to show that your prescribed service or product is the best one to treat your condition and that no other satisfactory alternative is available, the plan may agree to make an exception and cover the drug for your care.

Explanation of Benefits (EOB) – a description, sent to patients & health care providers by health plans, of benefits received & services for which the health care provider has requested payment.

Family and Medical Leave Act (FMLA) – a federal law that guarantees up to 12 weeks of job protected leave for certain employees when they need to take time off due to serious illness or disability, to have or adopt a child, or to care for another family member. When on leave under FMLA, you can continue coverage under your job-based plan.

Federal Poverty Level (FPL) – a measure of income level issued annually by the Department of Health and Human Services. The FPL is used to determine your eligibility for certain benefits and programs, such as Medicaid.

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Flexible Spending Account/Arrangement (FSA) – an arrangement you set up through your employer to pay for many of your out-of-pocket medical expenses with tax-free dollars. These expenses include insurance copayments and deductibles, and qualified prescription drugs, insulin and medical devices. You decide how much of your pre-tax wages you want taken out of your paycheck and put into an FSA. You don’t have to pay taxes on this money. Your employer’s plan sets a limit on the amount you can put into an FSA each year.

There is no carry-over of FSA funds. This means that FSA funds you don’t spend by the end of the plan year can’t be used for expenses in the next year. An exception is if your employer’s FSA plan permits you to use unused FSA funds for expenses incurred during a grace period of up to 2.5 months after the end of the FSA plan year.

Formulary – an approved list of prescription drugs subject to coverage under a specific insurance plan.

Genetic Information Nondiscrimination Act (GINA) – a federal law that prohibits insurance providers and employers from discriminating on the basis of genetic information.

Grandfathered Health Plan – as used in connection with the Affordable Care Act: A group health plan that was created—or an individual health insurance policy that was purchased—on or before March 23, 2010. Grandfathered plans are exempted from many changes required under the Affordable Care Act. Plans or policies may lose their “grandfathered” status if they make certain significant changes that reduce benefits or increase costs to consumers.

Health Insurance – protection that provides payment of benefits for covered illness or injury.

Health Insurance Exchange or Marketplace – online marketplaces where consumers can compare and purchase insurance plans. A provision of the Affordable Care Act, insurance marketplaces will open for enrollment on Oct. 1, 2013.

Each state will have its own marketplace, which will either be operate by the state, the federal government or as a joint partnership of the two. The marketplaces will employ insurance marketplace "navigators" to help consumers understand the process and choose insurance plans.

Health Insurance Portability and Accountability Act (HIPAA) – a set of laws that provides rights and protections for participants and beneficiaries in group health plans. HIPAA protects your personal information while also allowing healthcare administrators to conduct necessary business operations. It also outlines standards for portability and preexisting conditions.

Health Maintenance Organization (HMO) – a payer that provides services for members in a particular geographic area.

Services are provided through a network of doctors, hospitals and other medical providers selected by the plan.

Members are required to obtain care from this network of providers in order for their care to be covered, except in cases of emergency.

Health Savings Account (HSA) – a medical savings account available to taxpayers who are enrolled in a High Deductible Health Plan. The funds contributed to the account are not subject to federal income tax at the time of deposit. Funds must be used to pay for qualified medical expenses. Unlike a Flexible Spending Account (FSA), funds roll over year to year if you do not spend them.

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High Risk Insurance Pools – state programs that enable people with health problems to join together to purchase health insurance; even with subsidies, premium rates are high because pool members are high risk.

Indemnity Plans – also known as traditional health insurance, indemnity plans pay a certain percentage of the charges billed by the provider, and the patient is responsible for the balance.

In-Network – a list of providers who participate in a health plan's provider network. By using in-network providers, you may have lower copayments, and may not need prior authorization for services.

Itemized Bill – a type of bill for inpatient hospital services that lists every charge, grouped into specific categories.

Lifetime Maximum Benefit (Lifetime Cap) – a lifetime maximum benefit is the highest amount of money that your insurance company will pay to cover you for healthcare expenses. For example, you may have a $1 million lifetime maximum benefit. If your healthcare costs go over $1 million, then your healthcare costs will no longer be covered by that insurance plan. Under the Affordable Care Act, it is now illegal for insurance companies to impose lifetime maximum benefits.

Managed Care Plans – a plan which implements health care measures to control costs associated with heath care services. These measures may include pre-admission review for all hospital admissions, second surgical opinions, discharge planning, case management, prior authorization, physician networks.

Medicaid – a federal program, administered and operated on the state level, that provides medical benefits to eligible low income persons needing health care.

Medical Benefits Exclusion - a limiting provision. Some examples may include: injuries sustained in the act of committing a felony or misdemeanor, workers comp, self-inflicted injuries or suicide attempt, cosmetic surgery, and convenience items.

Medical Loss Ratio - the percentage of the premium that an insurance company spends on medical care, as opposed to administrative or overhead costs. As a provision of the Affordable Care Act, beginning in 2011 insurance companies must report their medical loss ratio and provide rebates to their beneficiaries if it is less than 85 percent.

Medically Necessary – term used when the service rendered was reasonable and appropriate for the diagnosis or treatment of a medical condition or illness.

Medicare Part D – Medicare’s prescription drug benefit coverage available through private companies. All Medicare members are eligible to enroll. Enrollment is optional, but to receive prescription coverage you must choose and enroll in a plan.

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Medicare Part D Coverage Gap (Donut Hole) - most plans with Medicare prescription drug coverage (Part D) have a coverage gap (called a "donut hole"). This means that after you and your drug plan have spent a certain amount of money for covered drugs, you have to pay all costs out-of-pocket for your prescriptions up to a yearly limit. Once you have spent up to the yearly limit, your coverage gap ends and your drug plan helps pay for covered drugs again.

Medicare Private Plan (Medicare Advantage) – a Medicare managed care program that allows Members who receive Original Medicare (Part A and B) the option to purchase a private managed care plan (through Medicare Part C) instead of Original Medicare. These plans must offer the same benefits as Original Medicare and may offer additional benefits as well.

Medigap (Medicare Supplement) – a Medicare supplemental insurance policy sold by private insurance companies to fill in the gaps in Original Medicare coverage. Depending on where you live, you have up to 10 different Medigap plans to choose from, labeled A through N (plans E, H, I and J are no longer offered), each offering a different set of benefits.

National Drug Code (NDC) – a numeric code assigned to a prescription drug by the FDA. If a drug has multiple strengths then there will be a different NDC for each strength.

Navigators – people employed by their state insurance marketplace to help consumers through the process of choosing an insurance plan.

Open Enrollment Period – the period of time set up to allow you to change coverage and choose from available plans, usually once a year.

Original Medicare – a federal program that provides health insurance coverage to qualified elderly and disabled individuals. Coverage rules and reimbursement methods vary based on the site of service. Original Medicare includes Medicare Part A and B. Out-of-Pocket (OOP) Costs – costs that beneficiaries “share” with their insurance company and thus pay for out of their own “pocket.” The most common forms of OOP costs are deductibles, copayments, and coinsurance.

Out-of-Pocket (OOP) Maximum – the total dollar amount of the expenses a member would have to pay for covered medical charges during a specified period of time. The out-of-pocket maximum may also be called stop-loss limit cost or catastrophic expense limit.

Out-of-Network – providers who do not participate in the network of a managed care plan.

Payer – a public or private organization that pays or underwrites coverage for health care expenses.

Pharmacy Benefit Manager (PBM) – a company specializing in the administration of commercial pharmacy benefits.

Per Diem – literally, per day. Term that is applied to the cost of care for a day and is an average that does not reflect the true cost for each patient.

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Point of Service (POS) Plan – a type of plan in which you pay less if you use doctors, hospitals, and other health care providers that belong to the plan’s network. POS plans also require you to get a referral from your primary care doctor in order to see a specialist.

Pre-Certification – utilization management program that requires the individual or provider to notify the insurer before hospitalization or surgical procedure. Notification allows the insurer to authorize payment and to recommend an alternate course of action.

Preferred Provider Organization (PPO) – groups of health care providers that contract with employers, insurance companies or other third party payers to provide medical care services at a reduced fee. Typically, enrollees covered by traditional insurance arrangements are offered incentives to use preferred providers, such as reduced deductibles and copayments, or increased benefits such as preventive health care.

Premium – the payment made by an employer or individual to purchase insurance.

Prior Authorization (Pre-Determination or Pre-Authorization) – review of services to determine medical appropriateness before services are rendered. The payer will decide to cover/not cover the charges prior to the services being provided. Many PH therapies require prior authorization.

Primary Care – health services that cover a range of prevention, wellness, and treatment for common illnesses. Primary care providers include doctors, nurses, nurse practitioners, and physician assistants. They often maintain long-term relationships with you, advise and treat you on a range of health related issues. They may also coordinate your care with specialists.

Primary Care Physician (PCP) – a physician, who oversees the general healthcare needs of a patient and may serve as the first contact in a managed care system.

Provider – institutions and individuals that are licensed to provide health care services; for example, hospitals, physicians, pharmacists, etc.

Qualifying Event – an event that would cause an individual to lose health coverage under COBRA. Reimbursement – payment made by a payer to a provider for approved medical services.

Rescission - the retroactive cancellation of a health insurance policy. Insurance companies will sometimes retroactively cancel your entire policy if you made a mistake on your initial application when you buy an individual market insurance policy. Under the Affordable Care Act, rescission is illegal except in cases of fraud or intentional misrepresentation of material fact as prohibited by the terms of the plan or coverage.

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Rider (Exclusionary Rider) - an amendment to an insurance policy. Some riders will add coverage (for example, if you buy a maternity rider to add coverage for pregnancy to your policy.) In most states today, an exclusionary rider is an amendment - permitted in individual health insurance policies - that permanently excludes coverage for a health condition, body part, or body system. Starting in September 2010, under the Affordable Care Act, exclusionary riders cannot be applied to coverage for children. Starting in 2014, no exclusionary riders will be permitted in any health insurance.

Self-Funded (Self-Insured) Plan – a type of job-based health insurance coverage where the employer pays the claims with its own funds. This is different from fully insured plans, where the employer contracts with an insurance company and the insurer covers the employees and dependents. Self-funded plans are governed by the Employment Retirement Income Security Act (ERISA).

State and Community Health Plans – programs that provide coverage and services with minimal private commercial and federal involvement. Funding and administration occurs at the state, county or local level.

Statement of Medical Necessity – official documentation from the medical provider to the payer which contains medical information to justify that the service rendered was reasonable and appropriate for the diagnosis or treatment of a medical condition or illness.

Step Therapy – a requirement that less costly and risky treatment alternatives be explored and deemed unsuitable first.

Tricare – Department of Defense’s managed health care program for active duty military, active duty service families, retirees and their families and other beneficiaries.

Department of Veterans Affairs (VA) – An independent agency of the federal government created in 1930 responsible for providing federal benefits to veterans and their dependents.

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